Myotonic Dystrophy

The Wheelchair

I didn’t want one. Ever. I don’t think anyone does do they?

But

I needed one. Long before I got one if I’m honest. There was about a year of denial. I can’t go anywhere without one now. My leg muscles have weakened to such an extent that even standing for any length of time is a challenge.

I have an electric chair. A manual one would have not have been very useful as I have not got the strength in my arms to power one. It would be left to someone else to push me around. So electric it is. The positive part of this is that I can travel easily around the (very) local area. The downside is, that if we want to go further afield, needing a car trip, the chair is extremely heavy. A two-person job to get it in and out of the car. Sometimes there is a passer-by to help. Sometimes there isn’t. Causing problems.

No would want this would they? I didn’t want a wheelchair.

But

I need one.

First steps (drive?)

All wheelchair (access) ramps are not created equal. Some are so steep they are downright dangerous. Something I learnt to my cost on one of my first forays on the electric wheelchair. There was a ramp into a building. An afterthought added in. I hit the ramp with the confidence of James Bond on the pull.

Surely, they wouldn’t build a ramp so steep you would topple over backwards potentially causing a serious injury

Yes. Yes they would. And do.

I was halfway up. The chair started to slow. A little. It started to tilt backwards. With alarming ease. I was past the point of no return. I was going to fall backwards. I was going to hit my head. Hard. A moment of nothingness as I fall backwards. Flying serenely in the air. And then WHAM! my head hit the floor. My wheelchair on top of me. People running to help. The staff running even faster to see if they could be held liable. I didn’t want a wheelchair

But

I need one.

I am now much more suspicious of any form of incline. Nervous even.

Getting used to it (accepting it?)

I have been a regular user of my wheelchair for over a year now. I am pretty good at driving it and have it has helped go to places that I could not have walked to or attended. Simple things like attending church or going to the cinema. I can do those things now. Perhaps more impressive is that I can travel with my wheelchair. I went to Los Angeles and New York in October. From this experience I urge anyone in a wheelchair to travel again. My experience of all the airports I went to was the upmost help and courtesy in all 4 airports I was in this year. America especially where all pavements encountered has a dipped pavement for wheelchair users. (Well New York and LA where I was). I am planning on going to Iceland and France next!

You have to plan ahead to take disability into account.

Given the choice I would prefer not to have a wheelchair

But

I need one.

I must accept this. Travelling showed it can help. It really did.

Other People

I have read about and indeed witnessed dreadful behaviour of others toward people in wheelchairs. The incident I witnessed was on a bus. Three able bodied women were standing in the space reserved for wheelchairs when a disabled lady needed to board the bus. The bus driver told them to move. They refused because “they were there first” and the wheelchair person could wait for another bus. The bus driver refused to leave until the disabled lady was in the correct place. They refused to budge for quite some time before storming off the bus and walking down the road thinking they had been hard done by. They were not asked to leave the bus, just move. It was embarrassing and shameful. It led to the person in the wheelchair apologising for being disabled and she didn’t choose to be this way.

No one should ever feel the need to apologise for a condition they did not choose to be in. No one chose to need a wheelchair. No one chooses to be disabled in any shape or form.

I am very lucky in that I have yet to have a negative experience in public with strangers. This might because it is very rare that I am completely alone. My wife is often with me. It could be just pure luck.

What is certain is that I am lucky to live in a country where disability does not mean being ostracised from society.

Disability stigma is present in every society, but in parts of Africa and Asia it can be particularly oppressive. In areas where research and technology aren’t available, people don't have explanations for conditions which can lead to dangerous misconceptions about disability to form.

If you are a moron who feels the need to harass or stigmatise anyone with any form of disability you are not welcome on this site and I politely ask you to bugger off.